January 30, 2008

I guess this is really happening. Either that, or someone went to a lot of trouble to tool me, printing up one copy of a book.

Nineteen days...

(By the way, I also wrote an article called "My Name is Schuyler" for the February issue of "Communication Without Limit", the monthly newsletter for the Prentke Romich Company, makers of the Big Box of Words.)

January 29, 2008

As part of the upcoming article in the March 2008 issue of Wondertime Magazine, you may now read a web exclusive interview I did as a supplement to the print article.

If you read it and find yourself wondering if I really am that eloquent, or if Wondertime was able to edit out all the "um"s and sputters and parenthetical blathering that I am prone to when actually speaking rather than writing, well, I'm going to say that I am just that naturally well-spoken.

January 26, 2008

I attended a media party here in Dallas the other night. These sorts of things aren't always the easiest for me, and not just because I don't drink myself into "life of the party" mode so much anymore. (What was cute when I was in college would probably just be sad now that I'm, you know, thirty-ten.)

Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.

The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.

The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.

I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.

Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.

That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.

And then you wait for it to slowly fill again, I guess.

One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.

On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.

I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.

I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.

God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.

In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.

I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.

In my dreams, she speaks to me, but I almost never speak back to her.

The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.

January 24, 2008

Last month, Schuyler was interviewed by Tim Rogers of D Magazine, a cool Dallas area monthly. It was a surreal experience, in which he emailed questions and she answered with the Big Box of Words, which was attached to the computer like a second keyboard. She took the interview very seriously and crafted her answers very carefully. I set up a camera to take pictures while we did it, because I am a nerd.

The print version hasn't hit the news stands just yet, so I can't say how it looks on the page (or if it's even in print at all, come to think of it), but you can read the article, "Thinking Out Loud", on the D Magazine web site.

January 22, 2008

While poking around the Wondertime Magazine site yesterday (and NOT looking for mentions of my upcoming story, because that would be narcissistic and weird, right?), I came across the story that had originally attracted me to the magazine in the first place. "A Different Kind of Normal", by Charlotte Meryman, detailed the story of the Foard family, of parents Michelle and Jim and their son Jimmy, who suffers from an extremely rare chromosomal disorder called Alfi's syndrome. The story ran in four parts (which was a little maddening since at the time, Wondertime only ran four issues a year), and it's an excellent exploration of the issues that face special needs families, particularly ones where communication is an issue. It's not an exaggeration to say that Meryman's story had a pretty profound influence on how my own book turned out.

What I hadn't seen before, however, were the accompanying videos, which may have been produced after the series ran. Go watch the complete four webisodes. At one point you'll see Jimmy using a slightly older version of Schuyler's Big Box of Words.

The world is full of stories like Jimmy's and Schuyler's. They deserve to be heard.

January 14, 2008

We went for a walk in downtown Dallas yesterday, not for any particular reason other than to visit the Crow Collection of Asian Art, which Julie had been wanting to see for a while and which was within the budgetary range most suitable for the grand Rummel-Hudson estate. (Free, of course.)

After we made our way through the gallery, we took a stroll around the art-filled grounds of the Trammel Crow Center and came across an outdoor sculpture called "Men Against Man" (1968), by a Norwegian-American doctor and sculptor named Kaare Nygaard. (In a weird coincidence, Nygaard was the surgeon who treated Australian composer and nutbag Percy Grainger, whose music I like.) The sculpture depicts six uniformed and faceless figures (soldiers? policemen?) carrying a struggling prisoner by his arms and legs.

Schuyler was taken by it immediately.

She bent close to the prisoner's face (or what would have been his face if he'd had one), touching it gently. She held his hand. She walked around the sculpture several times, touching his feet and hands, but she was very careful to never touch any of the captors.

Finally, she stopped near the prisoner's head and stayed there. She touched his face again, tenderly and with great care, and put her forehead against his while whispering softly in Martian. As I tried to take photos as quietly as I could, she kissed his head and smiled sadly to herself. Finally, she simply rested her face next to his, giving him the same wordless comfort that she's always given to me when she knows I'm sad. When it was time to leave, she looked at him one last time, purposefully not recognizing his tormentors, and gave a little wave to him as we walked away.

Schuyler is an eight year-old girl, and much of the time she's not all that different from any other. She laughs, she plays, she watches Kim Possible on television, and she makes up imaginary scenarios for us all to participate in. (In her most recent story, she is a superhero named Ice Girl, and Julie and I are her co-horts, Ice Mama and Ice Daddy. I told her we could assemble an Ice Girl costume for her and she could come to my first book signing as Ice Girl. So, you know, watch for that.) Most of the time, Schuyler is just like any other kid.

But then, like yesterday, something else will appear behind her eyes, something a little dark and a little sad, but also wise beyond her years. When it does, Schuyler doesn't try to express it to us, but instead she moves through her world like a shaman. I watched her yesterday as she poured out her compassion and her sad love for the idea of someone suffering oppression, a concept that I doubt she could even express if pressed.

Schuyler is like any other kid you might meet, and Schuyler is like no one else in the world. In her mysteries (and she has so many), she is a puzzle and a source of immense pride. Schuyler is my most inscrutable enigma, and also my most perfect muse.

Well, I've wanted to mention this for a long time, but I didn't expect it to happen quite this soon.

The February 2008 issue of Good Housekeeping has an article about Schuyler. Page 161. Look for Dr. Phil on the cover. Dr. Phil and me, we're tight now. He's going to come talk me down the next time I freak out.

The article is actually "by" me, in the sense that it consists mostly of blog material from the past year or so, edited to remove gratuitous F-bombs, clarify some of the narrative and generally make me look like a little less of a dumbass. It's long, about six pages, and features a full page photo of Schuyler. (It's the photo from the book cover, except in color, which is a little startling to see after all these months of looking at it in black and white.) I am extremely happy with how it turned out.

I mean, I feel a tiny little bit like throwing up, but in the good sort of "need to throw up" sort of way.

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While we're on the subject of the book and my increasingly fancy pants, if you live in the New York City area and would like to meet and/or abuse me in person, mediabistro.com is very graciously hosting a book release party for Schuyler's Monster on February 20th, the day after the official book release. Here's some info for you.

I met Michael about a year ago, when we both spoke at a panel on published bloggers in New York. The first thing he did was give me a gift for Schuyler. The next night, he found me at a book party we were both attending and hung with me for the rest of the night. If he ever felt his style cramped by the tag-along yokel, he never let on, and my impression of Michael is that he doesn't do much in this world that he doesn't want to do. That was refreshing, as was his attitude (similar to mine) towards using politically correct language where disability is concerned. I think we shocked a few people standing around us, and I couldn't be happier.

My impression of Michael Malice is not that he's some kind of terrifying narcissist, but rather that he has the ability to size up a person almost immediately and know what he needs to know about them almost instinctually. That clearly doesn't bod well for a lot of the people he meets. For me, it worked out pretty well, I think.

January 10, 2008

Rob: I think a lot of parents with broken children find God, and they find religion. They find a spirituality that sustains them. I certainly understand that, and I certainly respect it.

For me, I've always been an Agnostic, and I think I'm more agnostic now than ever before. You know, Schuyler's situation certainly raises a lot of questions, and it shakes any faith that you might have. But I've never given up on the idea of God. Julie says that she thinks the reason I could never be an Atheist is because then I wouldn't have anyone to blame. And I guess maybe that's true.

I do have a lot of questions that I would put to God about Schuyler, about all the kids like Schuyler, the kids who have it so much worse than Schuyler, about how that could happen. How a God of love and compassion can do that. But I don't have any answers.

My faith is in Schuyler, oddly enough. Watching her struggle and watching her fight. And I don't attribute faith to some invisible person in the sky, but I do feel very strongly when I observe Schuyler.

It's funny. I'm not sure if I believe in God, but I believe in Schuyler.

Rob: What do you see in Schuyler's future when you imagine, like every parent imagines their kids', even if they pretend they don't?

Julie: I would love to see her living by herself, having a boyfriend, girlfriend, whatever. You know, partner in crime. Just somebody to take care of her. I worry about that all the time. I don't want her to think that we're her caretakers, you know. Because she's independent like the both of us, and she...

You can tell that she wants to say so much, and she wants to do so much. And maybe that's a cheesy goal, but I just, I want her to be able to travel, and go to the movies with her friends, and drive and experience life and, you know, not have the old people chauffeuring her around and, you know, cleaning up after her. That's like my one goal is for her to, like, have her own life and not have to have us lagging behind her, checking up on her.

I mean, we're her parents. We're always going to be there for her, but you know, you gotta cut that cord. And that's going to be scary. That's kind of a scary thought to me, her being by herself, like, in an apartment like this, and cooking her own meals, doing her laundry, having pets, paying bills. It's a weird concept, because she has no concept of that stuff right now.

Rob: Yeah, I don't think anyone who knew me before Schuyler was born would have ever said, "Yeah, that's the guy to raise a child, and certainly a child with special needs." I was... Things were a lot different. I was a very selfish person. I wasn't a bad person, I don't think, but the decisions that I made in my life were very self-centered, and if things got hard, I would bail, I was out. And after Schuyler was born, I learned a lot about myself.

And it wasn't just that I couldn't bail on Schuyler. I found that I didn't want to. You know, we've been through so much, and it's been so hard at certain times, but at no point was I ever, "God, I wish I could get out of this."

You know, Schuyler taught me a higher purpose, and a higher feeling. And that's made me a better person. I'm a much better, a much different person than I was before Schuyler. So I don't think I certainly was the ideal father, but I've really learned to be exactly, I think, much of the time anyway, exactly the father that she needs. In that sense, she's been my greatest teacher.

January 7, 2008

Rob: I think it's pretty clear that I can be a sad person. It certainly comes out in my writing. Schuyler's situation makes me sad. I think about it. Sometimes I have dreams, I dream about her, and in my dreams she talks to me, and she tells me everything's going to be okay. And then when I wake up the next day, it's the first thing that hits me, that it was a dream. So it is sad, and it does weight down on me.

It doesn't seem to be sad for her, though. She's always very positive. She gets frustrated, certainly. But I don't know that she seems to get depressed about it. I think she's accepted the situation and is ready to fight. And so the joy that I get and the strength that I get in my life is that which I draw from her. And in that sense, she's made me a better person. I'm certainly ten times the person I was before she was born.

I think... There's a temptation, I would think, to feel pity for parents who have special needs kids. And yet, I see how much Schuyler has changed my life, and how much she's improved me as a human being, and I sort of think that people shouldn't pity me, they should envy me. They should be jealous because I've got Schuyler in my life, I've got Schuyler doing the "Schuyler Effect" on me.

And if they don't they should. They should envy me. And I hope that comes out in the book, I hope I represent her accurately and in a way that people can see beyond her disability to this amazing person. It sounds like a cliche, and it's absolutely true.

Rob: You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.

I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.

And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.

You know, in the past, people have asked me, they'll say "How do you think Schuyler will react one day when she reads that you thought she was broken?" You know, that she'll take some offense at the kind of language that we've used. I don't think she will react at all. I certainly don't think she'll be surprised. I don't think she'll feel like she's been deceived all this time.

We are very straightforward with Schuyler about her disability, and she fights it. She brings the fight every day, without any illusions, but also without any expectations that there's something that she can't do. She knows what she has to fight, and she knows that a thing that is broken is a thing that can be fixed. And a situation that requires this kind of work, she's exactly the person to do that kind of work.

So I think if Schuyler reads that one day, she's going to know that I understood, and I cared. I loved her, I loved her enough to take up this fight with her.

The day started with Schuyler's return to school after two weeks off. This meant that all our usual morning rituals kicked back into gear, including my favorite, singing the theme to Kenny the Shark with Schuyler, but it also meant watching her get onto the school bus again and watching it drive away while trying to suppress the agita and the mental images of various bus-related disasters running through my mind.

A quick look in the mirror before heading off to work revealed that I had something in my hair, something light-colored, maybe shaving cream. Only it wasn't. I tugged at it and ran my fingers through it, only to discover that what I was seeing was in fact grey hair. That's AWESOME.

I got to work just in time to be interviewed over the phone for the upcoming Wondertime piece (and I do not envy the poor intern whose job it will be to transcribe my um-filled babble). Not half an hour later, I received the nice review from Publishers Weekly (it did contain the word "stupid", but they were quoting me, so I have no one to blame but myself), and I was feeling much better about my day.

And that's when the university began testing the tornado warning system.

There really is only so much "BLAT!!! BLAT!!! Severe weather! Take cover! You're all going to die!!! BLAT!!! BLAT!!!" that I can handle today. It's going to give me grey hair.

The monster in this heartfelt memoir is polymicrogyria, an extremely rare brain malformation that, in the case of Rummel-Hudson's daughter Schuyler, has completely impaired her ability to speak. During her first three years, as her parents seek to find out what hidden "monster" is causing her wordlessness, they endure "two years of questions and tests and at least one unsatisfactory diagnosis." But while Rummel-Hudson initially rages at God for giving Schuyler "a life that would never ever be what we'd imagined it to be," his depiction of her next four years becomes a study not only in Schuyler's vivacious and resilient personality, but also in the redeeming power of understanding and a "stupid blind father's love." As he describes how Schuyler eagerly takes to various forms of communication, such as basic sign language and an alternative and augmentative communication device that provides whole words she can type to express her thoughts, Rummel-Hudson effectively and compassionately shows how the "gentle strangeness about her, like a visitor from some realm where no one spoke but everyone laughed," leads him to understand that "she was the one teaching me how to make my way in this new world." (Feb.)

January 5, 2008

Rob: I do think that there is a place for fathers' stories. I think that now more than ever, people want to hear the stories that fathers have to tell.

I think the past fifty years or so have been kind of a weird time for fathers. After World War II, I think fathers in our society were defined by their absence as much as by the things that they did. You had the fathers who were lost in the war. You had fathers who were absent because of their careers, because of their work. You had the "deadbeat dads."

So I think in the past maybe twenty years or so, you've seen this move back towards fathers who want to be involved and are insisting on being involved in their kids' lives. And it's a fascinating time, but it also, it's totally up for grabs. The stories that fathers have to tell are very individual. Especially with a kid like Schuyler, there's certainly no user's manual for Schuyler, and there's no job description for being a father, certainly not a father for someone like Schuyler.

So it's... I'm really excited about the number of fathers' stories that are being told, because they're all different, they're all individual, and I think that's great, and I hope there's more.

January 4, 2008

Julie: I think it's really shown me what I'm capable of, what my strengths are. Learning not to back down to teachers, to school administrators, to our families when they doubted us, that we just kind of did our own thing and persevered.

It's a pretty eye-opening experience, getting handed this huge responsibility for this little person, and being told "You have no guide book, you have no rules. This is what's wrong with your kid, and you have no idea why, and just, here you go, here's the book. Enjoy. Try to do the best that you can."

And I feel like we have done the best that we can. Some days are good, some days are bad. But at the end of the day, I think you and I can feel confident in knowing that we've raised a pretty amazing kid.

January 3, 2008

Rob: You as parents and family of broken children and disabled family members, you are the absolute best advocates for your loved ones. And that's hard. It's hard because it's... we want to defer to experts. Julie and I were both music majors. We had no experience with children. All that we knew was what we, what we felt in our gut about Schuyler.

And, you know, the experts and the doctors, they've been amazing, they've been great for us. But the one thing that they can't do is they can't tell the future. And we want them to, we want to hear that everything's going to be okay.

But the future's not written. You're writing the future, and your child is writing the future. And if you feel like the information you're being given isn't correct, isn't right, you have to go with that instinct. Because nobody knows your child like you do, nobody senses the things that are true and real about your child like you do.

There were two points in Schuyler's life that had we followed the advice we were given, by experts, and really "expert" experts, had we listened to that advice, Schuyler's life would be nothing like it is now. It was the fact that we didn't, we didn't feel right, and that we, we kept pushing for better answers that we finally got them.

So believe in yourself. That's hard, but it's absolutely vital, and in the end, in the end you'll be so glad that you did.

January 1, 2008

Rob: Being in a family with a special needs family member, particularly a child, it's very difficult. It's very hard on a family, it's very hard on a marriage. The divorce rate amongst couples with a disabled child is incredibly high, it's very depressing. And it's... it's hard because I think when you're in a relationship, you know, sometimes when things are hard you want to have that person you can turn to. But when that person is also in that same situation, you think that that's an ideal situation. And you know what? Sometimes it's not, sometimes it's the opposite. Sometimes two people fighting the same demons, they just, you know, it's so hard to be sympathetic, so hard to get out of your own head and out of your own world. And it's very difficult for families.

I think for a family to make it work, for a family to work out the issues inherent in having a special needs child, I think the secret is you just have to take all the narrative that society's handed you, all the expectations, and you just have to blow them away, start with a clean slate. Because the rules for your family and the rules for your child are going to be completely new. They're going to be, they're going to be... You've got to find your way, you've got to find your way, because they're not going to apply to anyone else.

I can write this book. I've read a lot of books, and I'll continue to read books, by other special needs parents. But the thing that strikes me is how every one of these stories is different, every single person has a different reaction, every single person, every single family member has a different way of dealing with it.

And that's fine, that's the way it should be, but you've got to find your own way. Because the standard rules aren't going to help you, they're not going to help you at all. They're just going to make you feel bad, they're going to make you feel like you're doing it wrong. But you're NOT doing it wrong, you just have to find the right way, and no one else can tell you that but you.

So it's hard, it's hard to find that, but it's also very rewarding. I can't think of anything in my life that's challenged me more or has made me grow more as a person. So it's worth it. It's hard, but it's worth it.